By: Kelly Rouba (May 17th, 2007).
Action online Magazine of the United Spinal Association.
This article was originally published in Action Online and is reprinted here with the express Permission of the United Spinal Association.
Multiple sclerosis can no longer be thought of as an adult’s disease.
Sixteen-year-old Elaine Mackey has written a booklet to explain multiple sclerosis to her peers, more of whom, like Elaine, are being diagnosed with the disease than ever before.
Although she is only a freshman in high school, Elaine Mackey has already taken over a few health classes as “teacher for a day” in an effort to make her fellow students aware that children and teens can get multiple sclerosis (MS), a disease commonly associated with adults.
“Some kids who knew what MS was thought that only adults could get that,” says Mackey, who was diagnosed with pediatric or childhood MS last spring. 
“I try to explain to them what MS is and show them some of the things that are different between me and them. I even take some pictures of my brain with me. And I answer any questions that they may have,” Mackey says.
A Book to Explain
After Mackey was diagnosed with MS, she had a difficult time explaining the disease to her peers and decided to create a booklet to provide them with a general overview of MS as part of a Girl Scout project.
Mackey, 16, said that the National Multiple Sclerosis Society has expressed interest in publishing the booklet, which is called Dear Friend, I Have MS: A Booklet for Friends of Teens With Multiple Sclerosis.
In the booklet, Mackey writes, “MS is a disease of the CNS [central nervous system]. The immune system goes haywire and attacks the myelin (which protects nerve fibers). It attacks in many areas (multiple) and leaves scar tissue (sclerosis). This affects the brain’s ability to send and receive messages.”
Puzzling Symptoms
Mackey also explains that symptoms of MS vary depending on the individual. Symptoms can include, but are not limited to, numbness, dizziness, fatigue, memory loss, poor coordination, slurred speech, and the inability to move certain parts of the body.
“If I try and walk on my heels, I fall over,” Mackey says. “And I have a slight twitch in my eye when I walk back and forth. I forget things and I have a hard time reading.”
Before doctors determined Mackey had MS, however, she only exhibited one sign of the disease. “I only had one symptom that we could tell-my arms were shaking,” she says. To determine the cause, doctors sent Mackey for an MRI and a spinal tap.
“By the time we got the test back, my whole entire body was shaking,” Mackey notes.
Mackey, who resides in Nicholson, Pennsylvania began making trips to the National Pediatric MS Center at Stony Brook University Hospital in Long Island, New York, to receive treatment soon after she was diagnosed with MS.
Falling Between the Cracks
Dr. Lauren Krupp, Mackey’s physician and director of the National Pediatric MS Center, says doctors treat both children and adolescents who have or are suspected to have MS. The center is currently recognized by the National MS Society as one of only six Pediatric MS Centers of Excellence in the United States.
“The centers are located all over the country and [staff] meet periodically and are trying to create guidelines for working together and moving forward,” Krupp says. “We are trying to not only create a clinical environment, but also set the foundations for research.”
Although doctors have only been recording cases since the 1980s, Krupp believes there were probably patients who had MS more than 100 years ago based on pathological studies.
“Our group became interested in pediatric MS about four years ago. We were seeing children referred by pediatric neurologists,” she said.
Before that time, children experiencing symptoms of MS would often visit pediatric neurologists who were unable to make a proper diagnosis and had to refer them to an adult neurologist, Krupp says. After the adult neurologist made the diagnosis, the children would return to the pediatric neurologist who did not know how to treat them. “The kids were falling between the cracks,” she says.
Presently, there are about 8,000-10,000 cases of pediatric MS in the United States, Krupp says. She also noted that the prevalence of MS varies in different parts of the world since “MS is a combination of environmental and genetic factors and their effects on the immune system.”
“Pediatric MS is relatively rare,” Krupp says, but “the key isn’t so much the numbers because if it’s your kid, it doesn’t matter.”
Looking for Answers
While a specific cause is not yet known, Krupp feels that collaborating with physicians from other centers will help to produce answers. “We don’t know how the kids’ future compares to the adults. [But], I tend to be optimistic because we have so many more therapies than we did in the past.”
Many children, like Mackey, are now receiving injections of medicine that helps to modify their immune system and alter the course of the disease. Some children also take steroids to help them manage the disease.
At this time, studies are being done on oral therapies that can be used to treat MS. “They are still in the fundamental research phases,” Krupp said, adding, “Most of these studies will be going on for two to three years and you figure another year in getting FDA approval. That is just an estimate (but) once that gets approved, that will be fantastic for the kids.”
For more information on pediatric MS, visit http://www.nationalmssociety.org or http://www.pediatricmscenter.org.
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Kelly Rouba writes frequently for Action.